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Slowing down can be rewarding


X-tra Special Advice


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September 06, 2012
Ted attended his Grosse Pointe North High School Class of 1982 reunion at the Grosse Pointe Yacht Club Aug. 4. Several classmates commented how they miss this column and encouraged him to keep writing.

One classmate, Barb Haug, said she was inspired.


While attending the 13th annual International Fragile X Conference in Miami in late July, we heard from others who echoed these sentiments.

So, without delay, here is that next column, our 100th.

At the conference, Ted interviewed 37 parents, grandparents, siblings and those affected by Fragile X Syndrome on camera. Here are the most-often repeated comments:

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u Children with Fragile X Syndrome, similar to most children with special needs, force us parents to slow down and experience the simpler things in life. We are all so busy with work, life and responsibilities we often miss life's simplest pleasures. In our lives, that translates to a leisurely stroll along the Detroit RiverWalk, including trips up and down the escalators inside the Renaissance Center, visiting Grandpa at Sunrise, a walk along the winding path to the lighthouse on Detroit's Belle Isle or around the Detroit Zoo.

u Hope is powerful, building and what we cling to like oxygen. With human medication trials well under way, we believe there will be a cure soon or, at the very least, more focused, advanced treatment. We believe tomorrow will be more positive than today. We expect a better future for our children. And we will never stop advocating for them. Never.

u Family means everything. Parents need the support and encouragement from family members — close and extended — and friends. Continue to give it to them. Small gestures are welcomed and appreciated. Big gestures are also appreciated. As in when one of our sitters became sick while we were in Miami and Mary Beth's sister, Anne Marie Langan, dropped everything in her life and stepped in for the last 36 hours while we were away. Very appreciated!

u We are not alone. There are countless families going through similar challenges, struggles and issues. Our bonds are strong. Though the Fragile X spectrum is wide, our journeys are parallel. Being a member of the international Fragile X family is an emotional bond for which many are thankful. Sharing our feelings is helpful, even cathartic. About three of every four parents cried on camera over three days of videotaping. Those behind the camera shed tears too, even the videographer who had no ties to Fragile X.

u Siblings love their brothers and sisters affected by Fragile X for who they are, don't want them to be any different, are fiercely loyal and protective, and care deeply. They are accepting and have an unwavering appreciation for the things their brothers and sisters can do, not all of the things they cannot do.

During the conference, we were awarded the Halstead-Bresnahan Family Award for dedicated and generous efforts on behalf of the National Fragile X Foundation and the Fragile X community. We were surprised, honored and humbled all at once. Thank you to the National Fragile X Foundation and all those who believe in us and in what we are doing.

Know we will continue to work harder to slow down more and never stop advocating for our son and for all people with special needs.

Never.

Grosse Pointe residents, Theodore G. Coutilish and Mary Beth Langan created this column to share experiences from their journey as parents of a child with Fragile X syndrome [fragilex.org]. Send questions or comments to mblangan@hotmail.com.


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